Singing helps keep her strong

Kelly Onanian

Wednesday

Nov 12, 2008 at 12:01 AMNov 12, 2008 at 12:08 PM

In a small classroom tucked inside the BurtWood School of Performing Arts, Morgan Lawler, 5, and her sister Marisa, 7, belt out Hannah Montana’s “Best of Both Worlds” and songs from “High School Musical.”

With their big smiles and strong voices, it is hard to imagine one of them was actually singing to save her life.

Morgan, of East Bridgewater, was diagnosed in June with a rare genetic disorder called fibrodysplasia ossificans progressiva, or FOP.

FOP causes bone to form in muscles and connective tissues, eventually creating an extra skeleton that immobilizes the body.

While there are only 600 confirmed cases of FOP around the world and life expectancy usually is less than 40 years, Morgan is fighting back with her voice thanks to the compassion of volunteer voice coach, Lorna Brunelle.

Brunelle recently began giving Morgan free singing lessons after learning singing could prolong her life by strengthening her diaphragm, which becomes restricted by the ribcage as FOP progresses.

“Her first lesson she was so shy and literally did not open her mouth the entire time, even after I played 15 songs for her,” Brunelle said.

“Her mother said Morgan sings with her sister at home all the time, so I decided to bring Marisa in. They’ve been jammin’ ever since.”

In order to help Morgan understand how singing can strengthen her diaphragm, Brunelle posted visuals in her classroom.

“I’m constantly telling her to puff up her belly like a blowfish. She’s so young it’s hard for her to understand, but she’s loving it and I’m hoping she joins our summer singing program which is offered to her,” she said.

Brunelle, an active volunteer for the Chernobyl Children Project USA and volunteer counselor to thyroid cancer patients, (a cancer which she overcame herself), is also planning a unique Thanksgiving fundraiser to help Morgan’s family pay for her medical care and FOP research. There is no federal funding for FOP research.

Brunelle created “Hat Day,” which will take place in all schools in East Bridgewater and the Bridgewater-Raynham Regional school district on Nov. 24.

Students who donate at least $1 to The Morgan Fund can wear a hat of their choice in school.

“If we get 800 kids to wear a hat, that’s $800. I’m also calling out to all other schools who would like to participate. It’s so easy because the work is done for them. I create the envelopes for the donations and deliver them to each teacher. All they have to do is collect the money, let students wear a hat, and I’ll pick the envelopes up,” she said.

Morgan’s parents, Kristine and William, said they are grateful for the support of Brunelle and the community.

Tickets for a Nov. 15 fundraiser at the Bridgewater Veterans Club, spearheaded by Morgan’s aunt, Kathy McManus, sold out.

However, donations can be made to The Morgan Fund, c/o Kathy McManus, P.O. Box 746, Bridgewater, MA, 02324.

Anyone who would like to learn more about creating a Hat Day for Morgan can contact Brunelle at 508-946-1071.

More information on FOP can be found at www.ifopa.org.

Never miss a story

Choose the plan that's right for you.
Digital access or digital and print delivery.